Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Friday, August 1, 2014

Hunter's Hope Family Symposium 2014

Amazing!

This trip was so special to us. I can not wait to tell you about it! Everyone who asks me how our trip was might as well just pull up a chair and get comfy. I think blogging about it would be the best way to really SEE how great it was that we had this opportunity. Let's get started!

When I told Hailey that we were packing our suitcases because we were going to be meeting some new friends she told me that she was going to pack her own suitcase. I got it down for her and let her fill it up. When I looked inside and then looked at her she was very proud of the job she had done.

I knew that the flight was going to be a long one and that Hailey wasn't going to sleep on the plane so I had a few surprises up my sleeve. Hailey LOVES blind bags. Any will do, but Josh's mom found Care Bear ones and these were the biggest HIT! Every 1/2 hour Hailey was given a new bag to open. Josh's mom really hit it out of the ballpark with these and they arrived the day we left. Good timing!

At the airport we checked out bags and for Hailey's medical suitcase they marked it with FRAGILE stickers all over. Hailey got sad she didn't get a sticker so we found one for her:

The flight wasn't terrible at all. Just long. Plus I was nervous, so that didn't help. We were due to arrive after midnight then we'd get a hotel and be off to the Symposium the next day. I've never been to New York before and I was happy I was getting to do so.

I would say we woke up bright and early but our body clocks were all messed up. Josh couldn't sleep, he woke up early. I couldn't wake up and probably didn't get out of bed until after 10 (which was really 7 NV time)

At 1:00 our shuttle arrived and Anna from Hunters Hope met us. There were already people on the shuttle and looking back it is so odd to think I didn't talk much on the shuttle because I didn't know anyone, but if I'm ever anywhere with any of those people again I'd be talking non stop. I grew to love so many people so fast on this trip!

Once we got to the Lodge I finally got to meet Kathleen! She was the one who told me about the symposium and help me get my family there! We checked into our room and got ready for the Welcome Dinner. We all wore our #KellyTough shirts and we were excited to meet all the families. We had some time before the dinner (about 6 hours) so we went to the restaurant and when we asked for a table the hostess asked us if we wanted to go and be seated with the other families. We did want to sit with them so she showed us the way. It didn't take long at all for someone to notice that we were new and introduce themselves and then that got the ball rolling. That and Hailey going up and peaking in every wheelchair or stroller. Right off the bat we met 5 families and I couldn't wait to hear their journey.

I didn't know what to expect. Was I going to be able to meet knew people and make new friends? Was I going to feel included and be accepted? Everyone who knows Hailey knows that she is a social butterfly and she is very big on HUGS! Were people going to be accepting of her and her ambush hugs?

Honestly I don't know why I was so afraid and nervous. I didn't feel any of those things! We sat at our table right next to a family that when I saw them I wanted to say, "I KNOW YOU!!!" I knew them because of Facebook and the page they have for their daughter Anna. I knew most of the people through their pages. It was their first year attending too so I tried to follow their lead.

At the welcome dinner after we ate we went around the room and introduced ourselves. I wanted to be the one to speak to everyone but Josh took the mic and didn't say any of the things that I had been planning on saying for a whole week! I didn't want him to make a bad impression of us!

After the introductions I mingled around and introduced myself to as many people as I could in the short amount of time we had before bed. I was exhausted and I wanted to stay up late but it wasn't going to happen. Traveling, waking up early, staying up all day, then having to wake up early the next day wasn't going to work. I figured I'd get myself rested and then I'll be adjusted to staying up.

Hailey wanted to go mingle as soon as we sat down at the table, but we managed to hold on to her until after the introductions and then she was off! She had NO problems making new friends!

She wanted to play with all the children and it warmed by heart. Hailey didn't see any children with a disability. She didn't see oxygen tubes and tanks, she didn't see suction machines, and wheelchairs. She just saw kids. Kids she wanted to be friends with. She wasn't afraid to touch, kiss, or hug anyone and I LOVE that about Hailey.

It surprised me that she did come up to me once and she was talking about a suction machine. She said, "when I was a baby you did that with me." That's true. I did do that. She remembers that?! How? Why? She met children with G-Tubes like hers and made sure she showed everyone which belly pad she was wearing and she wanted to see theirs.

I'm not going to lie and say that Hailey didn't bring up a lot of questions when people saw her. She did, and I knew she would. I was kind of afraid people would look at us and say, "she doesn't look like she has Leukodystrophy." because that's what I get when I am at home and I explain Hailey. I did deal with Hailey when she was in a semi-vegitative state, but only for a short time. Hailey didn't walk, talk, lift her arms, hold her head up, sit up, eat or swallow food, I had to suction her, and I had to rotate her at night so she wouldn't get bed sores, and that lasted for a year. She is still tube fed and she uses diapers as well. I know what it's like to care for that type of a child to a certain extent. I thought people would be mad at me. That's just me being crazy though. I heard people tell me that knowing Hailey's story and seeing her gives them HOPE. They love her ambush hugs and how she holds their children's hands and kisses their foreheads. I'm so glad Hailey brings them comfort. I think the most popular question in regards to Hailey was, "What did you do to get her back?" I hated having to say, "I don't know...." I do all the therapies, PT, OT, SLP. We do Hippo Therapy (horse therapy) I use the DoTerra Essential oils, we see a NUCCA Doctor. I can't pin point what it is about Hailey and the type of leukodystrophy she has that she is the way she is.

So many great people support Hunter's Hope. Hailey went around hugging people and I told Josh, "Hailey's trying to hug someone who's in the middle of a conversation, can you go get her?" Josh says, "that's not just someone. That's Thurman Thomas, Hall of Fame Running Back for the Buffalo Bills!!" He didn't mind at all. He hugged Hailey right back!

Hailey found her way over to Jim Kelly and he got a hug and she hung around him like she was part of his family. He didn't mind at all. He welcomed her over and it was so great.

They had a wall of photos of these amazing children and Hailey looked at it over and over.

Hailey also found Jill Kelly and I felt like I knew her. I read her book and I really wanted to thank her for doing this and being here for our families.

I NEVER felt uncomfortable around anyone ONCE. The families that have been there before were picking up like there hadn't been a whole year in between the last time they saw each other. Everyone was taking turns holding each others children. I even met parents who's children have passed away. I remember telling someone before I left that the symposium was open to all families who have dealt or are dealing with Leukodystrophy. They had said to me, "why would you want to be reminded of your child when they aren't there?" I know why they go and I'm so glad they do. They are such a comfort. They know what it's like for the families that this is happening to. They are amazing people. I learned you NEVER stop thinking about your child. It's not like you forget and then going to this symposium you suddenly remember again. They have people to talk to that know what they are going through. We are a family in the end.

After dinner we had to go to sleep, I couldn't keep my eyes open and I was afraid I'd stop making sense. Tomorrow was going to be the first day of the conferences and Hailey was going to be able to go to Kids Kamp!

The next morning we woke up and got ready for the day. First was breakfast then I'd take Hailey over to Kids Kamp. I worry when I'm not around Hailey. I have panic attacks when she goes to school everyday and I'm not right there to watch over her to make sure she was safe. I had such a calm feeling when it was time to take her. I just told them Hailey might need a little extra help and they were fine with that. I never felt worry for her. She had so much fun! She'd be upset if we came in to change her diaper as if worried we were going home.

I got the opportunity to speak with 2 doctors. After I told 1 of them how we were told Hailey has an unspecified Leukodystrophy I told him a little more info and right away this is where I am a little shocked....

The doctor mentions that Hailey may have ADEM Leukodystrophy. Um? Sound familiar? Hailey was originally diagnosed with ADEM. I thought those were 2 totally different things? I thought that ADEM mimics Leukodystrophy. I looked it up on the Hunter's Hope Website and there it was, ADEM Leukodystrophy. I told him that whatever information or medical records he needs we are willing to give him. I also heard from the families that were there to look up and go to a Doctor Escolar. Such crazy information! I just hope we get the opportunity to meet with these doctors so that we can know everything we need, to help Hailey.

The conference part was so informative. Did you know that there are only 2 states that test for Krabbe Leukodystrophy during a newborn screening? The newborn screening is that heel prick test that all babies get at birth. They could find out if a child tests positive at that time. Why don't all states test for it? Good question! Hunter's Hope is making it their goal to have every state add these tests to it's newborn screening. If there aren't people who will fight for this to be done it will go un tested. If a newborn tests positive for Krabbe Leukodystrophy or many other Leukodystrophys before they become symptomatic there are treatments that can be done for them. You can read about Newborn screening tests on the Hunter's Hope Website. Please take a moment to read it.
You can even read this article about how this simple newborn screening saved the life of a little girl we got to meet at the symposium.

After the conferences during the day we picked up Hailey from Kids Kamp and took her down to have a Family Photo taken of the children at the Symposium along with Jim, Jill and Erin Kelly. After the photo it was free time to mingle before dinner. Hailey made her rounds.

Every child was given a Buffalo Bills hat and Hailey wore hers with a big smile on her face.

Hailey with her friend holding hands and smiling!

Josh Elliot was on property with NBC Sports doing a segment on the Hunter's Hope Family Symposium which will air during the Half time show of the Hall of Fame Football game. Everyone MUST watch.

Hailey made sure Josh got a hug as well!

Hailey found Jill Kelly again and I love that you can see the love from her embrace.

Baby Anna! Hailey gravitated towards Anna whenever she was around. Anna always had a very stylish bow in her hair. Hailey could talk to Anna for hours. The moment I held Anna I instantly fell in love with her. I couldn't stop looking at her sweet face.

All the first time dads are inducted into the Hunter's Hope family by wearing a very special sweater and passing it along to the next new dad. This was Josh.

This sweater reminded me of that movie "Sisterhood of the Traveling Pants." This sweater fit every single dad that tried it on perfectly. One thing I wanted Josh to get out of this experience was that I wanted him to create bonds with other men so that if he ever needed to be able to talk to someone he could. I hope he was able to get that.

The next day was a very emotional day. VERY! After lunch they had separate sessions for the women and the men. We were able to get together speak about what we wanted to speak about with no judgment, just support.

After the separate sessions we participated in the EveryStep walk. We as families raised money to help support this amazing organization. We walked together. We wore our shirts that support our children and their courage.

This was my favorite shirt!

Some people only dream of Angels.

I have held one in my arms.

Beautiful!

We all participated in the EveryStep Walk and afterwards there was a balloon release for all the children who have passed. It was very emotional, and the balloons looked beautiful in the sky.

Lots of hand holding and hugs.

Another family that we met that I follow on Facebook was Lily. We love Lily's smile!!

These 2 families made me feel like I belonged immediately. I can't thank you guys enough for the conversations, the laughs, and the hugs!

Friday was also Josh's birthday and one of the best gifts was getting to see his brother and sister in law, Adam and Megan. Hailey was all smiles when she saw them. She made sure she introduced them to everyone there.

After the meals there were raffles and when Hailey heard her name called it was as if she won the lottery. She was so happy she won a prize! Then the next day she won again! She won a football signed by Jim Kelly and she thought it was so FUN!

The next morning we had a free family day and we decided we are SO close to Canada we have to go see the falls! Adam and Megan had rented a car and we were off to see this amazing piece of nature.

It was a quick trip, we wanted to get back and get ready for dinner. There was a talent show for all the kids and this was everyone's favorite part!

After dinner before the show, Hailey made her rounds and made sure to see how everyone was doing. She even stopped by to help with bottle duty. Everyone included Hailey and she was NEVER turned away for bothering them.

Then it was time for the show. Hailey absolutely AMAZED me! She was so fierce in her performance. I had no idea she had this in her. If you haven't seen the video it is a MUST and it is posted on Hailey's Facebook page. Every time I watch it I still get teary eyed!

I love this picture of Hailey and Lauren!! My heart swells looking at it!

After dinner we were able to move downstairs and just sit and socialize. I tried to talk to every single person there, but I didn't do a very good job at it and I'm mad at myself for that. It was our last night together and I just wanted to make the most out of it. It was getting late and we hadn't packed and it was time for Hailey's medication. Josh said that he would take care of it and that I could stay. That was very awesome of him. Before Hailey left she wanted to make sure she said goodbye to everyone she met.

Seeing her love for everyone is so touching to me.

Saying good night was very hard, thinking about it being another year until everyone is together again is even harder.

The next morning Hailey woke up and was very un-steady she couldn't walk without falling and my heart dropped. The combination of everything we had done and not getting enough sleep could have led to this but we have been through this before. There was a doctor there but we wouldn't have time to see him before we had to leave to catch the plane home. We kept Hailey in her stroller and things ended up not being her usual ataxic episode. Today she is able to walk but her gait is wider then usual. We are just going with the flow. It's hard to hear that everyone has a neurologist that they can call up and make an appointment with. That cares about their child and their case and we don't. I keep wondering if we belong here in Las Vegas?

This picture is of some of the amazing people who work for Hunter's Hope. Thank you guys for all your hard work and putting this amazing event together! My one suggestion to you is that you stand at the front of the door when you meet families and say, "Welcome to Hunter's Hope, Here's your complimentary box of tissues."

Just an FYI. I was given this card from the TSA agent who told me that the next time we fly we can call to set up a passenger support specialist to help with getting through security. He said every airport has one. This is great information and I had no idea this was available. Well now I know and I want to share this with you!

I can't believe we were given this opportunity. So happy I could meet these families, and doctors and especially the children. I'm so happy I can keep in touch with everyone on Facebook. It will make the next year a little easier to wait for.

If you get a chance please go to the Hunter's Hope website and look through it. It has great information for anyone who has questions about Krabbe or other Leukodystrophies.
Like and Share the pages of the kids that have Facebook pages. Everyone would love the support.

Thank you Hunters Hope for inviting our family to attend the symposium this year. I will never forget the wonderful experience we had together as a family!

#KellyTough

***Update taken from the Hunter's Hope Facebook Page:This Sunday, August 3rd, will be an exciting day... First, the Kellys share their story on ESPN's Outside the Lines at 9am EST. THEN, during half-time of the Bills vs. Giants Hall of Fame Game another story featuring the Kellys and some of our‪#‎Leukodystrophy‬ families will air! The game starts at 8PM EST on NBC. Please tune in and help spread the word!! ‪#‎NBCSports‬‪#‎ESPN‬‪#‎BuffaloBills‬